The parents of a baby who has undergone pioneering surgery in Belgium have decided to name her after a huge Damien Hirst statue in a Devon seaside town.

Verity Tugwell is named after the towering bronze figure of the same name which stands proudly on Ilfracombe harbour.

Verity's journey to this world was by no means straight forward - with her having to endure trailblazing procedures while she was still inside her m,mother's womb.

Her parents, Sophie and Matthew Tugwell, named her after Hirst's statue of a bisected pregnant woman holding a sword in recognition of her strength and fighting spirit.

In October last year, when a scan showed that Sophie and Dan's third child had early signs of Spina Bifida, they feared the worst - describing it as every parents worst nightmare.


Verity being monitored in hospital
Verity being monitored in hospital

The condition can lead to paralysis of the legs, bowel and bladder incontinence, loss of skin sensation and even learning difficulties.

Sophie and Dan from Bideford, who were already parents to two happy, healthy twins, went to their 20-week scan at North Devon District Hospital in October last year expecting to find out the sex of their unborn child.

But instead they were told there was something wrong with its brain.

Sophie said: "I can still remember the look on the pregnancy scanners face when she noticed it, it was a horrible feeling.

"They had spotted that she had what's known as a lemon shaped head where part of her brain at the rear had herniated into her spine.  This is one of the early signs of the condition.

"It was like a nightmare.  We'd had our twins, Connie and Bertie, in 2015 and that pregnancy was ridiculously straight forward, so we had no experience of receiving news like this."

The couple were referred to St Michael's Hospital in Bristol to get the Spina Bifida diagnosis confirmed.

Sophie said: "Before this appointment we thought that nothing could be done, it was a hard few days.

"Around 70% to 80% of people choose to have terminations at this point, largely because they can't deal with the uncertainty of not knowing whether their baby will be born healthy or not.

"In our hearts, we knew we wanted her in any form, but we honestly didn't think we had the option."

A pregnant Sophie in hospital being monitored
A pregnant Sophie in hospital being monitored

Doctors at St Michael's sat the pair down and explained they had three choices at this stage.

Sophie said: "We could choose to terminate the pregnancy, have a post-natal spine closure - which didn't really cure any potential problems - or we could try fetal surgery.

"This was a brand new and pioneering procedure which is basically the same as a post-natal spine closure but because it is done sooner - while the baby is still in utero - it limits any damage.

"We decided to go for it, but were told we had to act quickly as it needed to be done before 26 weeks, and at this point we were around 23 weeks."

The couple were told the surgery could only be performed in London and that only around 50% of those who opted for it were eligible due to certain medical criteria.

Within a week the pair were with a specialist team at University College London Hospital.

Sophie said: "The surgeon who carried out the procedure is from Belgium, he was over here teaching surgeons in London who it is performed.

"We went through extensive testing and had to wait a few days to find out if we were eligible or not.

"One morning they called to say that we were, but also explained we would have to go to Belgium for the procedure due to a few complications."

Sophie and Dan travelled to Leuven in Belgium where the surgery was scheduled for November 27, 2018.

Mum Sophie showing the scar from her pioneering operation
Mum Sophie showing the scar from her pioneering operation

The pair were out of the country for a total of 10 days, during which time Sophie had several more tests including ultrasound and MRI scans to ensure she was still able to have the surgery.

Sophie said: "It was nerve wracking to think we'd gone all that way and might not be able to have the surgery - we had to pay for all the travel costs ourselves.

"But eventually they confirmed we were good to go - making us just the fifth people in the UK to undergo this procedure."

It was just before the operation that Sophie and Dan had a conversation about their babies name.

Sophie said: "When we found out about the surgery I wanted to give her a name as I knew we would be meeting her before too long.

"My other daughter's God father had suggested the name Verity, which his partner found amusing because he had not given that much thought to their own children's name.

"Tied in with the statue in Ilfracombe, it gave us an image of strength and the cross section of the pregnant mother also symbolised the surgery - plus it's a lovely name too.  We thought it was perfect for her.

"On the day of the surgery, we noticed that all of our family members had changed their Facebook profile pictures to an image of the Verity statue which was a real tearjerker for us."

The surgery took between four and six hours and saw Sophie cut from hip to hip.

She said: "Once they had opened me up they removed my uterus, inserted fluid to float the baby to the top and injected it with a paralytic so it wouldn't move.

Damien Hirst's Verity
Damien Hirst's Verity

"They then carried out the operation, closed her up and covered her wound with a pioneering form of fake skin which is actually made from shark collagen."

For two days after the operation Sophie was given an epidural to numb the pain.

She said: "However, after this I wasn't allowed any pain relief because I was till technically pregnant.

"I was limited to paracetemol, which really didn't do much for the pain.  It was very hard going for a few days.

"It was really uncomfortable, mainly because the baby kept wriggling - but at the same time that was amazing because it meant she was OK."

Sophie came home a few days later, determined to see her twins in their first ever school nativity play in Bideford.

However, shortly after the performance, more drama unfolded.

Sophie said: "My waters broke at 29 weeks and I was rushed to North Devon District Hospital before being blue-lighted in an ambulance down to Derriford.

"They knew I wasn't in labour, my waters had broken due to the effects of the surgery.

"I had to stay in Derriford for five weeks over Christmas and New Year.  We even had all our family down for Christmas Day on the ward."

Verity in an incubator at Derriford hospital in Plymouth
Verity in an incubator at Derriford hospital in Plymouth

Sophie's C-section had always been planned for 34 weeks, which was seen as a normal time to deliver a pre-term child.

Sophie said: "The birth went off without a hitch and Verity was born on January 25 weighing 4lbs and 12oz.

"We had no idea how much movement she would have but I had prayed that she would come out screaming and kicking - and she did.

"Afterwards she did incredibly well.  She needed a little bit of oxygen but was off it later that night.

"I was able to hold her the next day, although she had to stay in an incubator for the first week due to the skin patch on her back from the surgery - no one really knew what to do about it so they kept her on her tummy."

January would turn out to be a stressful month for the family - as well as all the trials and tribulations of Verity's birth, Dan started a new job and was commuting down to Derriford with the twins to see Sophie, staying in a nearby Travelodge.

However, after two weeks Sophie and Verity were transferred back to North Devon District Hospital's Special Care Baby Unit (SCBU) for a week.

Sophie said: "Because of the nature of the pioneering surgery, no one really knew what to do about the skin on her back, so we were transferred back up to Great Ormond Street hospital to see a specialist.

"She now has a beautiful scar on her back which is in the shape of an angel."

Verity is now four months old and, remarkably, has full feeling in her legs and total mobility.

Baby Verity who has very ticklish feet
Baby Verity who has very ticklish feet

Sophie said: "She even has ticklish feet, which is incredible.

"She smiles all day long and is on the verge of laughing too.

"Due to all the after care we haven't had the chance to take her to see the Verity statue yet, but it's a priority now we're home and settled."

This week Sophie returned to North Devon District Hospital' SCBU to give a talk to staff there about the condition and the treatment they had been through.

Sophie said: "We are really keen to raise awareness of the options that are open to people in the same position.

"We want people to see that this miracle surgery was performed on ordinary people from North Devon.

"It was very therapeutic talking to people who can actually make a difference to the lives of others=.

"If we can help any parents who think there is no option for them, then it's all been worth it."

Sophie has set up a Facebook page called Fetal Surgery for Spina Bifida UK in the hope of meeting other people going through the same experience.

Sophie and Matthew with baby Verity and twins Connie and Bertie
Sophie and Matthew with baby Verity and twins Connie and Bertie

What is Spina Bifida?

Here's what the NHS website says about the condition:






Types of spina bifida

There are several different types of spina bifida, including:





Symptoms of spina bifida





Read more about the symptoms of spina bifida.

Causes of spina bifida


These include: 

  • low folic acid intake during pregnancy
  • having a family history of spina bifida 

Read more about the causes of spina bifida.

Diagnosing spina bifida




Tests after birth


Tests may include:

  • an assessment of your baby's movements to check for paralysis


Treating spina bifida

Treatments for the symptoms or conditions associated with spina bifida include:

  • treatments for bowel and urinary problems



Read more about treating spina bifida.

Preventing spina bifida with folic acid


Folic acid recommendations




